~ Acquired Brain Injury (ABI): from the acute hospital to early rehabilitation – more on: www.CaringforPadraig.org and www.ansaol.ie

Worthwhile

The following post turned out longer than expected, and might not be everybody’s cup of tea nor glass of wine…

If you don’t feel like reading tonight, go straight down to the end of this post and learn how to become a good German in ten easy steps. It’s great fun (and so useful these days that I was tempted to mail it to Varoufakis, just in case:)

There are evenings when I think there is nothing worthwhile to write about. (I hope you haven’t noticed:) There are other evenings when I am so tired that I find it difficult to put coherent sentences together. (I’m sure you’ve noticed that.)

Today, for whatever reason, I really want to share with you what I think about two really important questions. I want to avoid the incoherent sentences produced by a tired mind and late night writing, so I am starting to write a bit earlier. It’s just after noon, Pat has left to meet up with other mothers in a big rehab centre, Pádraig is having his nap….

What are these questions? –

How can I change the attitude of the neuro rehab health establishment in Ireland?

What is more important – to be pragmatic and take what we can get thus gaining in a material way, or to insist in what we believe is right, running the risk of loosing out in a material way, but affecting sustainable long-term change.

The first question is on my mind because of remarks made by people responsible for the system over the past one and three quarters of a year – again and again.

To give you an idea, here is a selection of what has been said by health officials and leading doctors (quoting from memory): our care and rehab for persons with severe acquired head injuries here is as good as anywhere else in the world – no need to access services in other countries; instead of wasting your money on expensive treatment why don’t you use it to look after yourself, spend your money and go on a relaxing holiday; don’t worry about dropped feet, bed sores and other injuries – those can all be looked after and fixed if their brain recovers; there is no requirement for immediate rehab, better wait until they’ll have recovered a bit better to take full advantage of it; three months of rehab is sufficient; given the limited resources we have, we cannot waste them on persons with very severe acquired brain injuries; we understand your concerns but we have to be realistic.

This includes telling the public what health officials tell us parents at meetings when they are supposed to support us and help our children: that they think it’s ok for young people with very clear therapeutic needs to stay for months and years in acute hospitals, collecting one injury after the other. And to put them into nursing homes thereafter. With an hour or two of therapy. A week. That we should use the money our friends and family fundraised to go on a well-deserved holiday, instead of wasting it on care (abroad) that won’t make a difference anyway.

We can show how our children improve when they receive the right care and therapy. We need to do this with confidence and without fear of loss of “privacy”. (I know, this is a difficult one as we are taking decisions on behalf of our children’s privacy.) And – even if our children’s condition did not improve, they still need the care and attention any human being (with several decades of life ahead of them) deserves.

And play Mr President by Pink to them again. And again. And again. “What to you feel when you look in the mirror? Are you proud?”

Change will not happen quickly. But it will. Because nobody in their right mind can allow the situation as it is allow to continue.

If I think back, I had not the slightest idea of what ABI even meant, never mind what effect it has on persons, or how it should be treated. People need to know. Because it could happen to you tomorrow.

The second question is on my mind because it’s one we are faced with on a regular basis: Do I accept an “arrangement”, do I “make a deal” because that’s the way it works? For example, do I allow my politician to push my child ahead in the queue (at the cost of another person)? Do I accept a completely inadequate service or financial compensation because it’s better than nothing? – Or: Do I know what is right and what is wrong, and do I insist in what is right? For example: Do I risk to annoy a consultant because I insist in what is right, to a point where I make a complaint or take a legal case? Do I accept one hour of therapy, or some financial compensation although I know this will never be enough?

What is more important for us and our cause? To be pragmatic or to insist in what is right? To get a quick fix and look after ourselves – or: take responsibility, follow the “categorial imperative”, and invest in change – even if that will not come tomorrow. There are many examples I could think of where people have been told: “it’s not worth it”, “be realistic”, “don’t you know how this works”, “play the game”. It has always taken the courage of people who were not afraid to stand up to be counted, people who were not afraid to loose if human rights were at stake, people not afraid of being looked down upon as “innocent idealists” – it took these people to make ours a better world. I would feel infinitely more comfortable in their company than in the company of the rich, successful dealmakers without principles.

We are proud, we are not helpless victims deserving charity, we know what is right, and we will insist in our rights.

It’s the time of the year when we are reminded of what happened to a young man with long hair and a beard who did not “make deals” – even when his life was at stake – a man who told the powers to be that there was another way. He insisted in doing what is right and rejected what was wrong. He had a short, difficult live and, eventually, ended up dead on a cross.

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4 thoughts on “Worthwhile”

You are not alone and it is definitely worthwhile, even if the costs spiritually mentally physically and financially are more than anyone can afford. Not doing what you do is unthinkable. You are doing everything in you power to make things better not just for Pádraig but for everyone, for everyone because you are telling everyone’s story. Many many of us have had similar experiences to you but we have just given in become victims, bystanders, the silent majority. Others are doing as you do and the cost is high, it is crucifixion. But it is worthwhile because if nobody does it life is just hell for all of us. The cost is high, but then when did anything worthwhile come cheap. Our health system is good, it is good because of people like you who are doing someone else’s job. It is good because in many many instances people whose job it isn’t do things, very often very small quiet things that nobody really notices or that nobody cares to appreciate, conversely they are often put down by those who should have done these things in the first place. Our health system should be excellent.

I could say so much more, I could give instances from my own experiences. Maybe there will be a time and a place, but in the meantime I will continue to read what you have said and have a good long think and maybe look humbly at my own failures and resolve to do better in future no matter how long or short that future may be. Most of all I will take courage from reading about your efforts. I wish you success.
Looking forward to the resurrection with all my heart,
Kay.

The good news is, Kay: there is less than a week to go till Easter Sunday. You know, I have been thinking of writing a second blog under a different name. Because there are times when I am so desperate that I don’t know how to continue, how to take all this and continue. Never in my life have I experienced emotions like these and so strong: rage, helplessness, desperation; and then love, hope, energy – all really close, and next to each other. There are things I had heard of but never thought they existed in reality, at least not for me. So when you say all these good things about me, about us, you have to know that my, our hearts are broken, kaputt beyond repair. That on 27 June 2013, this van heart us so badly that we will never recover. We are trying to continue and fight for Pádraig. But there are times, when I feel so beaten that I wonder where and how to find the energy to get up again. This energy comes from you and the family and friends of Pádraig. I had no idea how much love is out there. I feel so privileged for having experienced what love can do. It can move mountains. And, especially around this time of the year, we are reminded that it is resurrection that follows crucifixion. We have nothing to loose and all to gain.

I think it is worthwhile to fight but I also think that this is your very personal decision because you always should be free to decide what to do. Some will be strong as you and will fight ( wich will be very good for all the rest) and other will not be able to do it (which is also quite understandable because it is soooo hard).
We spanish people say : Mejor una vez rojo que mil veces colorao. It is better to fight once and being hurt than being slightly hurt thousend times.
I support your position enterely but I would support you too if you would give up and understand Kay in that way.
Besos y abrazos, from all of us

You are so right, Ana. – And to be honest, I have no idea where people get the impression from that we are so strong. I don’t feel strong at all. Very often, I am so speechless and beaten wondering what will hit us next. But is the getting-up-again that counts, not how often you’ve been beaten. Thank you for your really kind words and your support for Pádraig.